Monday, 27 January 2014

Long time, no write. Actually I have had little enthusiasm for anything much at all and little energy for what I have to do, let alone what I may want to do.

Miss M, diagnosed on New Years Day with leukaemia has been in hospital ever since, apart from a brief interlude of a bit over twenty four hours at home. She developed an alarmingly high temperature so it was a quick admission when they reached the hospital which is fortunately only about ten minutes by car from her home. She was started on antibiotics straight away, before blood test results were available. Fortunately they hit the right antibiotic for the particular infection, rather than a more generic cover all type. She's getting over the infection but looks worse now than earlier as she was so sick with it. After the infection goes, she has seven more days in hospital without anything alarming happening, before she can go home again. If something happens, the whole cycle starts all over again.

This has been wearing on all of us and especially on her parents. One or other of them is with her day and night. Complicated by split between them. It has been made clear to DIL that she has to put aside her issues. Her daughter comes first.

Son has been living here and juggling work, oncologist meetings, hospital stays etc. I'm much further away than his house or work so extra time and travel is involved. He's also pushed financially with various commitments. Big sister has been here with me for a while, but school starts tomorrow for her and the following day for big brother. I have no idea if one or both will be here with me and for how long. Son would take them to school and pick them up in afternoon. This place is fine for one person, OK for two, but is getting cramped with a teenage boy full of angst and hormones and his younger sister going into Grade 6 this year.

I taught her to knit two years ago and she remembered everything I had told her. She has made a pouch for her iPod shuffle and made these gloves in just over a day. Made flat, she sewed them up. She is planning on a hat after seeing my circular needles but Miss M would love a pair of pale blue gloves so that's what she is working on now. I found some pale blue Bendigo Luxury 4 ply in the stash. She worked out herself that thinner wool probably meant more stitches needed. I love the nail polish. That will have to come off today. Her school has a very strict uniform policy. She can keep the polish on her toes.

Apart from rescuing her from a couple of mistakes early on in the piece, I have done no knitting.

Life was further complicated by the death of son's old car. It went well but he knew it was not going to last much longer. He picked up Big Sister from her mum to come back here about a week ago. As he went past a KMart, he remembered he needed to buy something. Came out to find car would not start. He called a friend to jump start it. Nothing doing. They suspected starter motor and called the NRMA. The girl on phone was very good. On hearing where he was, she asked if he felt safe there. Not a very salubrious part of Sydney at all, known for bashings, shootings, and stabbings. When he said he had young daughter with him, a serviceman was dispatched pronto. Unfortunately starter motor had gone and car needed clutch start. Unfortunately, the ancient gear box and exhaust did not take kindly to this and are now nearly dead.

His mechanic friend told him to cut his losses. He's buying another car and picking it up tomorrow. The last thing he needs is transport troubles and concerns. I have lent him the money as he was unprepared .

So life has been perplexing, puzzling and tiring and energy sapping here. Doctors are overall pleased with the numbers involved in the leukaemia treatment, but the side effects are harsh. Diabetes involves several injections a day and regular blood checks every three hours, even at night. Pancreatitis, also from the steroids, is still there and there are other problems too.

We'll get there, even if it takes a couple of years, but there are far too many more diversions from the straight road than I like.

Tuesday, 7 January 2014

Miss M is still in hospital and has been dosed up with steroids. Her first does of chemotherapy will be on Friday and if she has a good reaction to that, she may be able to come home at the weekend. Chemotherapy will continue every Friday and other medication at other times through the week depending on test results. For probably at least two years.

My son says the staff are wonderful. Nothing seems to be a trouble for them. She has been resting most of the time and sometimes "the lights are on but no one is home." However, the steroids have made her a bit hungry. Over a day yesterday she nibbled some roast chicken and had almost a litre of strawberry milk. I don't share her tastes at all as I find strawberry milk, yoghurt, icecream unpleasant and artificial. However, it's a start for her.

There are two other little girls from her school also with leukaemia. They are at the other end of the long treatment. However speaking to their parents has been helpful to my son. An encouragement but also with helpful pointers for the trip down this road.

The support is amazing and my son is overwhelmed. As am I. Prayers and good wishes have flooded in from all over the world as the word spreads. I belong to quite a few groups on Ravelry although I am active on only one of them. One of the moderators has organised for Miss M to receive cards and small gifts. This was all spontaneous and when I opened up the group a coupe of mornings ago, I burst into tears when I saw this. I don't cry much, but this generosity really touched me. I have had questions about gifts, favourite colours etc.

We are coping as we gradually come to terms with this sudden, unpleasant surprise. A friend called on Sunday morning to take me to church with him and I told him I felt beyond exhausted. However, by the time we arrived home about 3:00pm, I realised he had been right to make me go out with him. Son has been at the hospital most days and spent a couple of nights there at the weekend. He's tired as he is juggling a lot of balls at the moment but his daughter comes first, very definitely.

Thursday, 2 January 2014

No I can't and perhaps it's just as well. I did see that eldest son would go downhill to very major back surgery. He's recovering well and woke this morning feeling very good. That was the first time he could say that since the replacement disc and fusion surgery. We were out there last Saturday and it was good to see him emerging from the fog of a mass of painkilling drugs.

I certainly didn't see his brother moving in with me because of a breakdown in his marriage. He has done things around the place which I cannot do with my busted shoulder, but of course I would much rather the split hadn't occurred. I'm not sure what will happen there. He definitely wants to be back together but perhaps the less I say of DIL the better. I am not impressed with what I have actually seen of her behaviour, let alone with what I have been told.

Then yesterday the family was hit by a large bus careening unseen around a corner. We were all left feeling totally flattened.

Miss M, my nine year old granddaughter, has been unwell for several weeks. The doctor diagnosed and infection and growing pains which I know are a recognised ailment. She has been very lethargic and eating practically nothing.

My son found out yesterday afternoon that she had been in Westmead Children's hospital since the morning. He drove out. They told him they were 99% sure she had leukaemia. Probably Acute Lymphoblastic Leukaemia or ALL. We were flattened. Just flattened.

Today she had a general anaesthetic so spinal taps, bone marrow samples, brain fluid drains etc could be done. This is to work out just which variety of leukaemia it is. Probably ALL. She also had an infusion of platelets as her blood has very little clotting ability right now. Leukaemia in children accounts for 30% of childhood hospital admissions. All now has a total remission rate of 98% but there's often a long road between diagnosis and remission. She was told being sick could make her hair fall out and that it would be curly when it grew back. She likes curly hair so was happy with that. Treatment consists of several weeks of chemotherapy and then weekly and monthly doses of drugs, along with tests to see progress. This lasts probably two years for girls and three for boys. She's just back in the ward from theatre and the picture shows her still asleep. Her monkey friend which she has had since babyhood is with her and she has her familiar pillow.

The family has rallied in support and messages are flying around phones.